Being an Invisible Patient – Living With CFS / CFIDS / ME

I made pumpkin bread today. Both sides of my sink had some dishes – not a lot, but enough to feel like I needed to wash them before baking – so I washed them first. Since I don’t have a dishwasher it took about twenty minutes to get everything into the dish drainer, but then I was ready to bake! It was just a simple mix of adding eggs, pumpkin and a couple of other things to the dry ingredients, but by the time I had finished folding in the dry mix I was so tired I had to go sit down. There is something extremely wrong about that.

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I’ve always heard that if you write, you should write what you know. This is what I know: with all things considered, I am actually one of the lucky ones.

It would be easy to say, “The worst thing about having Chronic Fatigue Syndrome is ____”, adding any ailment or pain to finish that statement. However, what is truly the worst thing about having Chronic Fatigue Syndrome is being an invisible patient. Living each day with the knowledge that many people have no idea what kind of misery you go through and/or don’t believe there is anything wrong; hoping to receive support and understanding from friends and loved ones… As I said – I am actually one of the lucky ones.

Although I despise the moniker “CFS” it is the most widely accepted and utilized name in America. Other names are used – Chronic Fatigue Immune Dysfunction Syndrome, Myalgic Encephalomyelitis – and many patients and advocates have tried to have to have it changed to one of these, or something else entirely, in order to reduce the trivialization that occurs by calling it CFS. Of course, figuring out what to call the illness doesn’t matter that much if faced with a medical professional that doesn’t believe the condition even exists. Unfortunately, there are many physicians that fall in this category, choosing instead to think that the person is a hypochondriac, drug seeker, suffering a psychological disorder, exaggerating their symptoms, or just lazy. Either way, misdiagnosis or a medical name that trivializes the condition are two of the main reasons that patients are ignored by medical professionals and their communities alike.

I was diagnosed with Chronic Fatigue Syndrome over two years ago. Suffering from a sudden onset of flu-like symptoms, I began a series of visits to my general practitioner and underwent several blood tests to try to determine what was going on with my body. One of the blood tests showed an abnormally high Epstein-Barr level. As my doctor went on to explain, it’s not uncommon for Epstein – Barr virus (EBV) to show up in a blood test since it’s one of the most common infections in the world – it’s what causes mononucleosis. Much the same as a patient that has had chicken pox will continue to carry the herpes virus that caused it for the remainder of their life, people who have had mono/EBV will continue to carry Epstein-Barr; the body just produces antibodies so you don’t “catch it” again. In most cases it never causes a problem again, but in some circumstances the level can become significantly high and recreate the same symptom set as mono – pain and discomfort, sore throat, headache and body aches, extreme lethargy… Instead of being around the 100-120 range, as expected, my EBV levels were almost 20 times that. So, my doctor sent me home with instructions to help me through and signed off on my chart thinking everything was okay. If only it had been that easy!

The following months found me continually exhausted – sometimes unable to get out of bed until the middle of the afternoon, and then only to move to the couch in the living room. Going to work and focusing on daily routines was agonizing, and my ability to concentrate on complex problems or situations was almost gone. It was like living in a fog. My throat hurt regularly, but it wasn’t red and there didn’t seem anything to attribute it to. Even when I wasn’t very active my joints and muscles felt tight and sore. When I would be sitting in a room with my family, they would be comfortable in short sleeve shirts and, unable to regulate my body temperature, I would wear a sweatshirt and have a blanket. Migraines had been an occasional problem for years, but suddenly I had an onslaught of headaches that seemed to originate from weird places on my head. Every time I thought I was going to have a good day, I would realize several hours later that it was not going to work out that way. Imagine having a horrible case of the flu every day and you’ll begin to understand what it was like.

One of the reasons I count myself fortunate – through it all, my doctor refused to give up. He took each new symptom and tried to find the root of the problem. Whenever I came in with something that required more specific knowledge, he would refer me to a specialist. The gastrointestinal problems and acid reflux landed me in the outpatient center at the local hospital for scans and scopes. Mysterious aches and pains, along with inconclusive blood test results sent me to meet with an oncologist. I had x-rays, scans, endless questions, countless injections and blood draws. It would have been a nightmare if I hadn’t suffered so much outside of the different doctors’ offices. After meeting with my family practitioner off and on for over six months and being tested for Lyme Disease, Lupus, and Cancer, among other things, he finally gave me the news that he thought I had Chronic Fatigue Syndrome. It was as if a blessing and a curse had been handed to me simultaneously. I had no idea what the implications and future difficulties would entail, but I left his office that day with a diagnosis and if only for a moment, felt briefly relieved.

My joy was short-lived as I began to discover the appalling lack of information about my condition. It took an even steeper dive when I realized that many believed it was a syndrome that actually existed. Time after time I had people tell me that they must have CFS as well because they were always tired. After the third or fourth person said that I began to rethink sharing the information at all. After waiting for months to find out what was wrong so that I could begin treatment and get well, I learned that there was no prescribed treatment, no type of prescription or pill that I could take. To make matters worse, it appeared that aside from my doctor, very few people even considered me sick. Most of them just thought it was in my head.

Understandably, when someone doesn’t look or seem ill in a traditional way – feverish, weight loss, gaunt features, and conclusive test results – it can be difficult to comprehend what is going on. As a society, we are conditioned to believe that any significant illness has some sort of test that proves it exists beyond a shadow of a doubt. There are nose swabs to detect influenza, horrendous throat swabs for determining if someone has strep throat, blood tests for cancers or diabetes… And if none of that works, we can always try x-rays, EKG’s, scans or MRI to see what’s going on. CFS has no test. No determining markers in the blood, no mass that shows up on a scan. Even recognized as CFS for over thirty years (and diagnosed under other names for several hundred years), scientists still aren’t even sure what causes it. So many people think it’s either psychological and completely in a person’s head or that it doesn’t exist at all and the “patient” is exaggerating for some reason. Confusing the situation is the fact that one patient can present with completely different symptoms than another. A comprehensive list of possible symptoms for CFS involves every system of the body and, when compiled, goes on for page after page… approximately 20-30 in all. Hundreds of issues that may or may not show up from one patient to the next… Diagnostic tools vary from country to country, but there is a certain set of symptoms that a person must have for a continued length of time before the diagnosis will occur. And that’s only if the doctor is one of the few that thinks it’s a disorder at all. It’s incredibly frustrating, to say the least!

My life has turned into an exercise in faith about my condition. Even though very little funding is used to research chronic fatigue and the myriad of symptoms that patients have, I have to believe that someone will somehow make some head-way. I try not to spend a great deal of time defending myself to non believers, although I do occasionally get criticized or ridiculed when I’m silly enough to bring it up. After dealing with this situation for years I’ve even become quite good at recognizing the ‘tells’ of a person that thinks I’m crazy or lying: eyes glaze over in disinterest, nose flares in distaste, lips turn down in a grimace that always makes someone look slightly disgusted with me, and quick to follow on the heels is the cessation of the conversation and I’m usually left watching them turn away to do something they consider more productive with their time. I’ve learned to deal with these dismissals and try not to take it to heart as I’m sure I’ve reacted with negativity and skepticism to at least one person in my life. Maybe one day others will learn to try to handle me with the same sort of care. To use an age-old argument for the existence of things unseen – I’ve never laid eyes on (insert your version here) a million dollars, but I know beyond a shadow of a doubt that it exists. CFS requires something of the same type of suspension of belief due to tangible proof – it requires going on faith.

I am so sorry that you’re dealing with this disease and even more so that there are so many that don’t believe that the disease exists, which just adds to the stress of the disease. If there are angels, I hope the ones that are peering from that abandoned building will watch out for you. All my best.

Thank you, Katie! That is so sweet and thoughtful – I can’t tell you how much I appreciate your kindness. It is stresseful and difficult, but there are so many others that have it worse… I truly am lucky. Thanks for reading and thanks for your lovely comment! I’ll never look at those pictures the same… lol!

I adore your photos of those angels. I want to move in that house and keep them company. I’d leave them looking out the windows though. It’s got to be a good omen.I wonder if the people who left them there did it so that the angels would watch out for them? I love thinking up stories for photos, and I love it even more when the photos give me ideas. 🙂 Take care!

I think so too! The invisibility of the whole situation is one of the most difficult aspects for me to deal with. I’m sorry to hear you’re able to relate, but it’s always nice to know you’re not alone… Thank you!

Yep. Seems like some people don’t think you are really sick because you don’t look sick, but it’s a huge struggle inside, physically, emotionally, etc. Fortunately, I have a handful of awesome family and friends who know my struggles and try to comfort and help the best they can. It makes such a big difference to be able to rely on them for support. I also find that blogging about it and exploring creativity helps. Hope it helps you, too. Hang in there, you are not alone.